A Boy and the Budget

President Obama’s Federal Budget for the Fiscal Year 2012 allocated funding to various programs and initiatives designed to help “Win the Future for People with Disabilities.” These proposals include: expanding autism research, increasing support for workers with disabilities, and increasing funding for the education of children with disabilities. Click here to read more.

Have you met my son Jack? He’s pretty awesome. Ok, I’m kind of biased, but he really is. He’s handsome and smart, with a goofy sense of humor. He loves to play the violin, go bowling with his friends, eat pizza and watch old Tom & Jerry cartoons. He has two brothers, who are equally awesome, and they spend a lot of time being gross boys together. You know, laughing about gross boy things. Jack likes hotels a lot and spends a lot of time researching them, because he wants to own a hotel when he grows up.

Sounds pretty typical on paper, doesn’t it? Jack has autism. And in that one word, anything typical goes right out the window… and fast.

His past, present and future are anything but typical. As his mother, I am plagued by questions about how my baby boy “got” autism. I am constantly fighting someone for access to insurance coverage, or for his therapies, or for appropriate educational services. Like most parents of a child with autism, I lie awake at night wondering how my child will support himself, because although he is very smart, the social and communication deficits that are the core of autism will make sustainable employment very challenging – and that’s if there is even a company that would hire him.

One out of every 110 people in America today is a “Jack.” The tsunami is coming.

In my life as Connecticut’s advocacy chair, I try to read and process as much as I can about policy and legislation that may impact all of the “Jacks” here in my state, so I can be as effective as possible when communicating the needs of our community to state and federal policy makers. I am NOT a policy maker, but I’m a mom advocating for my very own Jack and every time I see “autism” in a legislative document, I consider it a victory. Having been at this autism gig for over seven years now – helping my state enact autism insurance reform law, as well as cultivating a close working relationship with elected officials — I also have a pretty decent understanding of what it takes to get policy-makers to pay attention to the issues that affect individuals with disabilities like autism.

I recently read President Obama’s federal budget proposal for people with disabilities, which became the impetus for this blog piece. I was pleased to see that the President’s proposal included funding for research through the NIH (National Institute of Health), so that we can get to the root of the autism epidemic and provide appropriate treatments for our families. The President’s proposal also includes “a $200 million increase for the Individuals with Disabilities Education Act (IDEA) State Grants to provide a high quality education and help offset state and local education costs for children with disabilities.” Among other recommendations, the President’s budget plan proposes funding to encourage workforce innovation to make jobs accessible to people with disabilities (as Walgreens Distribution Centers has done) and suggests appropriating “$24 million to the Department of Labor for the Disability Employment Initiative, which awards grants to build the capacity of One-Stop Career Centers to serve individuals with disabilities.”

I might actually sleep a bit tonight knowing these proposals exist. I’m also comforted knowing that Autism Speaks has developed resources for kids like Jack as they make their way through adolescence towards adulthood (see links below).

Make no mistake, this is not a political endorsement. Autism is not defined by a political party. It is defined by the families who live it day in and day out. That being said, I do hope our elected officials in Washington, DC read this blog entry and take it to heart. One out of every 110 people in this country are relying on them to help us take care of our precious children.

My son has high functioning down’s syndrome with pervasive development disorder, i.e. mild autism. University of Michigan diagnosed him, but the Tuscola County Intermediate School District of Michigan does not recognize the diagnosis. So I am left to travel more than two hours just to get him diagnosed and treated. He is refused occupational therapy and we can’t travel that far on a weekly basis for that treatment. I am tired of these differing ways of diagnosing and treatment on a facility to facility basis. How does the united states of america expect us to all raise our kids in the best most proper way, when they can’t all come to a common censensus on how to deal with it all!!!

I have a little brother who is 7 and also has autism . I too stat up late and think about how his life will be when he is older ,how he will support him self. Now is the time for people to know what are families are going through and now is the time for others to help and be helped

Shannon I just read your post my son who is 5yrs also likes old Tom&Jerry cartoons.I have not really thought much about the hardship he will face as he goes into adulthood. I have been trying to get as much help for him now as I can But I have not been very successful,However I have given it some thought and it made me cry.I hope it dose bring awareness.

I didn’t think much about it either until the last year or so. I couldn’t because how can we, when autism is so consuming. The horrible reality is that we HAVE to at some point “go there” and we have to let our policy makers know that we need to start fixing it NOW…in fact we should already be started!

Way to go, Shannon! Over the years, I have begun to shift my thinking from finding a cure for autism to ensuring that the supports are in place for when Katherine “ages” out…..Like Jack and Katherine, there are so many individuals with autism who will be entering adulthood and we want our children to be successful and as independent as possible when they get there. This is on top of those that are already reaching that stage and you hit the nail exactly on the head when you said, “…we HAVE to at some point ‘go there’…….” and we need to keep sending the message to every legislator involved in policy making that “we need to start fixing it NOW…” I’d love to hear Katherine say someday, “Mom and Dad, I need some help filing my tax returns!”
And just to clarify, I don’t mean that I don’t want a cure to be found—of course I do! I envision that someday, the result of all the scientific research that has been done will reveal more specific answers to some of the questions we, as parents, have been asking over and over: Why does my child have autism? I would not want future parents to experience the struggles & challenges I’ve experienced raising a child with autism (2 children to be exact!)
Shannon, I know your post has hit home with many people!!!!

My son is 11. We recognized his autism at i yeat. He has had excellent help that i struggled to get in the past ten years (many tears)…He is on the spectrum but HIGHLY functioning. I should be happy for the prgress he has made, but because his signs arent as visual to the common person, people just think hes kinda wierd. I just had a PPT last week and the concern of ther staff (public) of the school is that what will happen to him in middle school? will he have diffuclty navigating around the school..Can you believe it!!!! They are worried (the bullys might get to him) This is crazy!!!